About International Pemphigus & Pemphigoid Foundation Natural History Registry
- About International Pemphigus & Pemphigoid Foundation Natural History Registry
What is a Patient Registry?
A patient registry is an online data system that systematically collects, stores, and retrieves patient data for analysis in research studies. The IPPF Natural History Registry serves to:
- Provide a convenient online platform for patients or their legally authorized representative to report cases of pemphigus and pemphigoid.
- Conduct a prospectively-planned natural history study that will result in the most comprehensive understanding of both diseases and their progression over time.
- Characterize and describe the pemphigus and pemphigoid population as a whole.
- Assist the pemphigus and pemphigoid community with the development of recommendations for standards of care.
- Assist researchers studying the pathophysiology of pemphigus and pemphigoid.
- Support the design of clinical trials that explore new pemphigus and pemphigoid treatments.
What types of data will be collected in the Power of Patients Registry? Is the data secure?
The IPPF Natural History Registry collects data on the following topics:
- Medical and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
The IPPF Natural History Registry follows strict government guidelines to assure patient information is protected. The registry platform is served over HTTPS, providing encryption of traffic to prevent eavesdropping and man-in-the-middle attacks. Communication between the registry platform application server and the database are also encrypted.